Minna Johansson: Caring for patients with long covid—a compassionate tightrope

What do our reactions to long covid reveal about medicine’s uncomfortable relationship with uncertainty? Minna Johansson reflects

After the initial outbreak of covid-19 cases and the surge of deaths in many countries, another painful consequence of this viral infection has become increasingly apparent: persistent illness in people with initially “mild” symptoms. Many have shared frightening testimonies of a variety of persistent symptoms, such as intense brain fog, fatigue, muscle weakness, breathlessness, and difficulties concentrating.

As is often the case with symptoms that lack a clear biomedical explanation, many stories from patients reveal a blatant failure of the healthcare system to respond compassionately to this uncharted experience of suffering. Too many patients feel dismissed, disbelieved, and ignored. 

At the same time, hypothetical biomedical explanations are emerging to try and explain these experiences—often supported by small studies that use sophisticated technologies to investigate potential abnormalities. Despite often limited clinical relevance, these hypotheses rapidly diffuse into clinical care and the public domain. This phenomenon is not new or particular to our response to persistent post-covid-19 illness (or “long covid”). Indeed, it is only a new chapter in our inability to care for people with “medically unexplained symptoms,” with the medical complex primed to respond not with compassion, but either dismissal or prompt medicalisation. 

This tension within contemporary medicine became abundantly clear to me when I, previously healthy and active as a GP, contracted covid-19 in June 2020. I had a high fever for almost two weeks but was never seriously ill. I did not need hospital care. However, the brain fog was intense and did not disappear with the fever. Two weeks after the fever and cough had resolved, I could still not watch Hollywood action movies because I could not follow their (rather simple) plots. I lost words and had difficulties following the thread of conversations. I could not read—I could only see letters and not the words or the sentences they formed. Three months after the infection, I still have difficulties reading more than half a page at a time. This is a scary and frustrating experience. 

There are many perspectives from which this experience could be understood. It can be explained as a biomedical process in my body. Indeed, considering the intensity of my symptoms, I would be surprised if a sophisticated test could not detect an abnormality in the structure or biochemistry of my central nervous system. In a quest to eradicate the uncertainty, those committed to responding biomedically may toil to find “the cause.” Yet, where we chose to direct the cone of light will determine what we will see—and what we see will in turn determine how we interpret and experience our symptoms, their causes, and the range of reasonable solutions to them. 

How would it help me to know that my cerebrospinal fluid is low in some substance, or that an MRI shows structural changes in my brain, if there is no available treatment? Would this mean that my symptoms are less reversible? By what merit would a measured “cause” trump an unmeasured or even an unmeasurable one? And do I need to focus on “the cause” in the first place for me to get better? I worry that a desperate search for the cause could lead me into a downward spiral of medical explorations that require continuous attention to the variations in the expression of my symptoms.

This illness can also be understood as a maladaptive response to a level of psychological stress that exceeded my ability to cope. Like many of my colleagues in clinical practice and research, I have worked too much during an extended period—and was probably close to burnout before becoming acutely ill. 

Lastly, my experience can also be understood in existential dimensions: how will my respect and belief in myself be affected by reduced cognitive ability if my sense of value is primarily built on my intellect? Further, there are inevitably social dimensions to this—will, for example, a biomedical diagnosis relieve me of social responsibilities and expectations that I feel unable to live up to? 

All of these explanations offer plausible contributions to a holistic understanding of the illness. And a reasonable approach may be that each individual could choose to understand their experiences with the explanation that is most helpful to them for finding strategies to cope with their symptoms. Yet although this approach may seem sensible on the surface, it also seems incomplete. I find it striking that all these lenses for understanding long covid focus narrowly on the individual, while failing to zoom out and reflect on the context in which these experiences occur. They fail to account for how our common cultural understanding of suffering can affect our individual experience of persistent illness after covid-19. 

Missing from the public debate and scientific publications on long covid is a historical and cultural perspective. How were symptoms like this understood in ancient times? Is there something in our culture that makes these symptoms appear “unexplained”? What role does our modern reluctance to accept uncertainty play in this epidemic of persistent illness? How does our aspiration to control and optimise our health reduce our ability to find meaning in living with unexplained disability and disease? Perhaps we should spend a little less time focusing on causes and instead reflect more on the questions we are asking about long covid and why. 

When I was panicking after not understanding anything 13 minutes into Mission Impossible, I called a wise and compassionate GP colleague. After carefully listening to my incoherent story, she said; 

“You have been under a lot of pressure this past year, and now covid has hit you hard. These symptoms do not sound strange or unexplained to me. Give yourself a break. Let this take some time. And don’t give these symptoms too much attention. Let it be. Be kind and generous to yourself. I am not worried—I believe you will be alright.” 

Why do we feel so unsettled by the unknown? I would be lying if I said that I have not felt worried about my own symptoms. I have also worried deeply about my patients who have shared with me their desperate experiences of persistent illness. But in my colleague’s words I found a compassionate response and what felt to me a more sensible strategy: to trust in the regenerative ability of my body, mind, and soul. To be kind and generous to myself. To focus on what brings me joy and meaning. To humbly accept that I may never know what caused these symptoms. To realise that even if some of them never go away, I can still live a meaningful life. 

Sometimes, a compassionate response to suffering may be to accept and embrace the uncertainty, pain, and joy inherent in living.

Minna Johansson is a GP at the Herrestads Healthcare Centre, Uddevalla, Sweden and director of Cochrane Sustainable Healthcare. Twitter @minnajohansson1

Acknowledgement: I want to thank Victor Montori, Iona Heath, and Karsten Juhl Jørgensen for their generous and valuable input to this text, and Karin Mossberg, my compassionate GP colleague. 

Competing interests: I have read and understood BMJ policy on declaration of interests and have no relevant interests to declare. I write as an individual rather than as a representative of the organisations I work for.